Hello, I'm new here and have never used a forum before. I was diagnosed with SLE in 2004 and to be honest it really freaked me out I was 18 and treated it like if I didn't acknowledge it then it didn't exist....well 7-8 years later and boy was I sorely mistaken! I'm glad to say I'm taking action and receiving a doctors help. I am just lost as to what I can do to make things better at home and my husband doesn't understand why I have such a hard time and thinks I just need to push past the pain and being tired. I try but its not that easy and I fell like the harder I push my self the worse it gets. If anyone has any advice I would love to hear it! :-) thanks!

magistramarla

08-07-2012, 08:15 PM

Hi Brie,
Welcome to WHL. Here is something to get you started:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

We usually recommend that people read it and show it to loved ones. Read the stickys at the beginning of each forum, and try to get your husband to read some of them, too. We've had a lot of discussions about dealing with loved ones who don't understand. This is a lot to deal with, and often our spouses have a tough time dealing with it, too. Is yours the kind who likes lots of information? Mine is, so he is always researching autoimmune stuff online and sending me the links. He's the typical male who wants to problem-solve - he has this hope that his research will someday find something that will help me.
We have a lot of young members who are near your age - I'm old enough to be your Mom- LOL. I'm sure that you will soon get to know some of them.
We're a cyber family here, and we all try to support each other. Welcome to the family!
Hugs,
Marla

Brie_86

08-07-2012, 09:30 PM

Thanl you Marla! I love the link too. I will look at it more tomorrow it's bed time for me :-) but wanted to say thanks befor lights out.
Brie

tgal

08-07-2012, 11:41 PM

Marla said it all very well so I am just going to say hi and welcome to the family. We are glad you are here

steve.b

08-08-2012, 12:05 AM

hi brie and welcome.

another link that i find helpful is
http://forum.wehavelupus.com/showthread.php?11692-The-Open-Letter-To-Those-Without-CFS-Fibro-…

Saysusie

08-08-2012, 10:43 PM

Hi and welcome. You've already been given some great information and I can't add much more. I just wanted to make sure that I added my welcome to those you've already received. I'm glad that you found us and that you decided to join us.

Peace and Blessings
Namaste
Saysusie

jmail

08-09-2012, 07:20 AM

Hi Brie_86! The hard part for me has been finding, and then acknowledging my limitations with this. You can't push yourself too hard, else you take a chance of making yourself sicker, compounding the situation...

Brie_86

08-09-2012, 09:00 AM

Thank you all so much for the welcome and advice! I was able to learn more about the condition and show my husband as well. I'm also taking him to the rheumatologist with me so he has a better understanding of my limits and how they shouldn't be pushed too hard. I'm still learning this site and how to use it but I'll be around here a lot I can believe how reassuring it is to just know I'm not alone! Thanks guys!

Danica01

08-09-2012, 01:17 PM

It is very tough on you and your loved ones. I have found that my Tim loves to fix things from the car to the water heater and everything in between. I know that is a typical male thing. They feel useful and worthy when they can fix things. Tim has struggled at times because he can not fix this. He wants to make it go away and wants me to fine. Sometimes there is a lack of understanding on both our parts. I need to try and understand what is happening from a caretakers side and he has to look at it from the patients side. It is a juggling act that sometimes feels like a disaster but you just have to pick up the balls you dropped and keep tossing away! It is hard, very hard.

The great part about this is that you found us and as you can see soooooooooo many people are here to help and they all have loving encouraging comments and links to get you through this. The support here is unconditional and amazing! No one ever turns away from you and someone is ALWAYS here to help! For me the best part is at least one moment in time we have felt what each other has felt. That is what makes this forum so special.

So, welcome and PLEASE keep sharing!!!!! We will help get you through the bad times and celebrate the wonderful times!!!!!!

steve.b

08-10-2012, 05:06 AM

...... I'm also taking him to the rheumatologist....

that is a very good idea.
it has helped a few other members also.
then the doctor can say you need to rest.
males (like me), accept it when a doctor says something.